John O'Mahony (Fine Gael) | Oireachtas source

I want to refer to an issue raised by Senator Conway-Walsh and by Senator Swanick on a Commencement matter earlier relating to the drug Spinraza which could transform the lives of a small number of children and adults. No decision has been taken yet and I fully realise the Minister is not directly involved. The advice of the HSE and the NCCP is taken on board because new drugs come onto the market every day and the Minister cannot be involved in all of the decisions but the issue here is the vacuum and the delays for the parents of the children involved. I know some of the families involved in Mayo and they have told me of the uncertainty and the lack of information or timelines. I ask the Leader to emphasise to the Minister that there needs to be information for these families, who are in a very traumatic situation. I also ask the Leader to urge the Minister to get the HSE to give information to the families when a decision is made. It is available in 20 other countries and it would not compromise any negotiations to say that, if the drug companies are looking for a higher price for Ireland than in the other countries, it should be brought out into the open. Pressure should be put on those companies if that turns out to be the case.